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AboutFace is an international organization providing support and information to families and individuals with facial difference. Networking database maintained at each of the national offices and with local chapters and contact people. Resources include newsletters, videos, publications, lending libraries, and more. (Anna Pileggi, AboutFace, 99 Crowns Lane, Toronto, Canada M5R 3P4; 416/944-3223,800/665-3223; FAX 416/944-2488; U.S. Office, Pam Onyx, Box 93 Limekiln, PA 19535; Phone: 800-225-FACE; FAX 610/689-4479;
About Face USA e-mail:
About Face International e-mail:

The Alliance of Genetic Support Groups

The Alliance is an advocacy network of people who have genetic conditions, parents and professionals. An updated Directory of National Genetic Voluntary Organizations is available ($35.00). The Alliance of Genetic Support Groups 4301 Connecticut Avenue, NW, Suite 404 Washington, DC 20008-2304 (202) 966-5557 Helpline: (800) 336-GENE (4363) Fax: (202) 966-8553
Home Page:
Executive Director: Mary Davidson

The American Cleft Palate Craniofacial Association (ACPA)

Dedicated to all aspects of facial birth defects, this 53 year old international network of professionals includes over 30 disciplines. With all aspects of patient and family care being represented, they are working to establish standard guidelines for care and for fair insurance coverage. They are encouraging the team approach to the care of all patients. (Nancy Smythe, 1218 Grandview Avenue, Pittsburgh, PA 15211;
Phone:412-481-1376; FAX 412-481-0847

Apert Support and Information Network

Provides support through newsletter "APERT NEWS," networking list for parents in USA plus several other countries and get togethers mostly in Northern California. (Christine Clark, Director, Apert Support and Information Network, P.O. Box 1184, Fair Oaks, CA 95628;
Phone: 916-961-1092

Association for Birth Defects (ABDC)

Phone: 407-245-7035

Carpenter Syndrome Network

Support and information network trying to link parents of children with Carpenter Syndrome. (Cathy Sponsler, Box 4215-48, 26661 Bear Valley Road, Tehachapi, CA 93561;
Phone: 805-821-1313; e-mail:

The Cleft Palate Foundation (CPF)

This public service and education foundation provides services to patients and families. CPF operates a 24-hour toll free CLEFTLINE service (800-24-CLEFT) for affected individuals and their families, and offers brochures and fact sheets on various aspects of clefting and other craniofacial anomalies. Some are available in Spanish. A selected bibliography for parents is also available. Provides information about cleft craniofacial teams and family support groups. (Nancy Smythe, 1218 Grandview Avenue, Pittsburgh, PA 15211;
Phone: 412-481-1376; FAX 412-481-0847

Craniofacial Foundation of America

Serves as a national resource for patients and families with craniofacial anomalies. It produces educational materials and networks patients and families. The foundation offers financial support for nonmedical expenses to patients traveling for evaluation and treatment to the Tennessee Craniofacial Center. Their latest free publication is "Craniosynostosis: Diagnosis and Current Surgical Treatment." Terri Farmer, Craniofacial Foundation of America, Erlanger Medical Center, 975 East Third Street, Chattanooga, TN 37403; 423-778-9192, 800-418-3223. VIEW WEBSITE


Phone: 414-336-5333

Let's Face It

Let's Face It publishes a 50 page Resource List once a year. To receive your free copy of our 1996 Resource List, please send a 9" x 12" self-addressed envelope, stamped with a $3.00 stamp to: (Let's Face It, P.O. Box 29972, Bellingham, WA 98228-1972. Call 360-676-7325 for bulk orders.

Mobius Syndrome Network

This growing network has a newsletter and address list for linking up people all over the United States. (Vicki McCarrell, 6449 Gerald Avenue, Van Nuys, CA 91406; Vicki 310-470-2000, or Lori Thomas 805-267-2570).


Phone: 414-336-5333

National Organization for Rare Disorders (NORD)

NORD is an educational link for organizations and individuals concerned with a rare disorder. (NORD, Box 8923, New Fairfield, CT 06812-1783; Phone: 203-/746-6518, 800-999-6673;

National Information on Child/Health Education (NICHE)

800-695-0285 or 202-884-8200 NCEMCH 202-625-8400

Neurofibromatosis, Inc. (NFI)

The organization for families and individuals offers free information about this neurological genetic disorder, identifies local support groups, refers to local medical resources, encourages research, educates legislators of NF family needs. (Mary Ann Wilson, 8855 Annapolis Road, Suite 110, Lanham, MD 20706-2924, 800-942-6825, TT 410/461-5213, in Maryland

Phoenix Society for Burn Survivors

An international network for burn survivors and their families, founded by Alan Breslau, an airplane accident survivor. Trained coordinators are located throughout the world. Newsletter, lending library, books and tapes for sale. (Alan Breslau, 11 Rust Hill Road, Levittown, PA 19056; Phone: 215-946-2876, 800-888-BURN; FAX 215-946-4788).

Pierre Robin Network

Their purpose is to network families of children diagnosed with Pierre Robin Syndrome (PRS) and help those who are interested in PRS. Vist their
web site at or
email at

Treacher Collins Foundation

This network links families with Treacher Collins and is directed by Hope Charkins-Drazin and David Drazin, a social worker and a psychologist who have a child with Treacher Collins Syndrome. (Hope Charkins and David Drazin, Box 683, Norwich, VT 05055;
Phone: 802-649-3050, 800-823-2055).

Wide Smiles

An information and support network begun for parents adopting children with cleft lip and palate. Their extensive resources include a quarterly magazine, phone and computer support, books, and much more. A new resource is Cleft Talk an on-line service at $18 per year for the magazine. (Joanne Green, Box 5153, Stockton, CA 95205-0153; Phone: 209-942-2812;
e-mail:; internet: